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Recently Diagnosed

harley

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harley Newbie
harley
Posted

Hi, I am new to this forum. I am 32 years old and was diagnosed with with Celiac about 6 weeks ago by positive bloodwork and a biopsy. According to the biopsy, my villi had some very severe damage. In fact, the Dr. said they were almost completely flat.

I started having symptoms about 8 months ago, after I had my first baby. Mainly, my symptoms are stomach cramping and frequent trips to the bathroom. I do not have typical D but a lot of undigested food and mucus in soft stool. Not to be to graphic. I have started taking digestive enzymes, gluten-free, and the appearance of the stool has improved a little but it is far from perfect. Still having some cramping. Some days are better than others.

I have been very vigilent about not eating gluten and have checked all personal care products. In short, I have not seen much improvement. I am a little concerned about refractory celiac.

Is it normal to not have seen much improvement yet? Any thoughts are much appreciated.

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Ursa Major Collaborator
Ursa Major
Posted

Hi Harley, and welcome to this board.

Especially with severe damage, it can take a while before you see improvement. It is likely that you also need to eliminate all dairy at least for a while, because the tips of the villi (which you don't have right now) are needed to digest milk products. Also, you may not be able to digest raw food very well at this point, and might need to cook all vegetables and fruits (no salad for a bit). It took me about six months before I could start eating small amounts of uncooked vegetables again, without it giving me an instant stomach ache and cramps, and coming back out undigested.

If cutting out milk and raw foods doesn't help, you may have other intolerances besides gluten. It is the rare celiac who has no other intolerances. But before worrying about that, start with dairy, if that doesn't help, take out raw foods (give it a few days each time to see if it helps). If after two weeks there is no improvement, you may need to try a real elimination diet.

harley Newbie
harley
Posted
  • Author
Hi Harley, and welcome to this board.

Especially with severe damage, it can take a while before you see improvement. It is likely that you also need to eliminate all dairy at least for a while, because the tips of the villi (which you don't have right now) are needed to digest milk products. Also, you may not be able to digest raw food very well at this point, and might need to cook all vegetables and fruits (no salad for a bit). It took me about six months before I could start eating small amounts of uncooked vegetables again, without it giving me an instant stomach ache and cramps, and coming back out undigested.

If cutting out milk and raw foods doesn't help, you may have other intolerances besides gluten. It is the rare celiac who has no other intolerances. But before worrying about that, start with dairy, if that doesn't help, take out raw foods (give it a few days each time to see if it helps). If after two weeks there is no improvement, you may need to try a real elimination diet.

Thanks for your feedback

Nancym Enthusiast
Nancym
Posted

Some people use the SCD to help their gut heal. The details are at: www.breakingtheviciouscycle.info

hez Enthusiast
hez
Posted

It took me about six months on the gluten-free diet before I started to feel better. I think because my damage was severe (not one villi standing) it took awhile to heal. I have been gluten-free for over a year and feel wonderful. I have energy and am not running to the bathroom. Everyone is different and everyone heals at their own rate. I agree with Ursula about the dairy. I took out milk for a good nine months. I can now enjoy it again!

Hez

Rachel--24 Collaborator
Rachel--24
Posted

Welcome to the board :)

I would not worry about Refractory Sprue....you just need more time to heal. 6 weeks isnt alot of time....especially considering you had alot of damage. With the flattened villi you'd be lactose intolerant which is gonna make you still feel "not so good"....as the others have said...its a good idea to eliminate dairy until you've healed more. Best of luck....be patient and keep up with the vigilance. :)

Luvs to Scrap Apprentice
Luvs to Scrap
Posted

DH was on the diet for 6 months before he noticed some consistent improvement and commented at 8 months that he is really starting to feel better. I wish there was a way to fast forward the healing time. My DS is in his 2nd month and it seems to take forever. Good luck! Kendra

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Matilda Enthusiast
Matilda
Posted

..

oceangirl Collaborator
oceangirl
Posted
I agree with what everyone has said, but just wanted to add that the diet is very difficult to get right at first.

You may think you're completely gluten-free at the moment but I wouldn't be surprised if you look back in a year's time and realise the you weren't really. It takes a long time to work out all the snags.

Once you start feeling better you'll start to spot the problems as they cause set-backs. Be encouraged that you've got lots of feeling better to look forward to.

Best wishes,

Matilda

Welcome to the Board

Yes, keep checking your diet, toiletries, cosmetics for possible gluten- it's hidden in so many forms! You do sound like someone who will need more time to heal where you were quite advanced in the disease. I've learned from this board that no one gets the diet right immediately; it's a learning process. Don't give up or think of the worst thing. Much luck to you and I hope you see huge improvements very soon!

lisa

harley Newbie
harley
Posted
  • Author

Thanks for everyone's feedback. I really appreciate it

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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